Desmoid Tumor Sarcoma

Very rare tumor.  Anyone every heard of it or had one?

Yes, very rare indeed.  I was diagnosed with a desmoid tumor (aka aggressive fibromatosis) after my ortho-oncologist removed the mass on my trapezoid muscle in April 2008.  (Diagnosis was not made until it could be biopsied during surgery.)  Preliminary diagnosis was "vascular tumor" detected in an MRI.  I'm just about ready to have my second post-op MRI and am so hoping there will be no evidence of recurrence, although I know that recurrence can happen years down the line.  I'd be happy to share any information I've gleaned on the subject!

My wife has been recently diagnosed with a desmoid tumor. There is a lot of information of the Desmoid Tumor Research Foundation website. www.dtrf.org  

So far to us this has been very confusing as this type of tumor is cancer but is not cancer. meaning it is a tumor that is to be considered benign but is not truly benign due to the fact that it does invade other organs and surrounding structures. Although it is not matastic  which is what makes it not cancer. 90% of patients that have this type of tumor do not die from the tumor but from what we have seen and read it can vary widely as to the quality of life with this type of tumor. 

As far as treatment goes that also varies. currently there is no defined treatment plan. There has been much success with radiation and chemo, but there has been success in other drug trials as well. i would recommend finding a Dr that has experience with desmoids for at least an opinion.

 

please feel free to contact me at

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I am 29 years old and have just had my second surgery for a extra abdominal desmoid. It is located in between my ribs on the posterior chest wall. The first time it was removed they misdiagnosed it and it grew back within three months and was 5cm. I just got the news that I have to come in to discuss treatment options becasue the margins were positive. Does anyone have info on what kind of treatment options I might get?

Thank You